Posts in Patient Stories
PATIENT SPOTLIGHT: Xavier Chen, Paris, France
PATIENT SPOTLIGHT: Xavier Chen, Paris, France

1.    Tell us a little about your background - personal and professional - and your journey with ALK+ lung cancer so far.

I am a 61-year-old French citizen of Chinese origin, now living in Paris. Beforemy diagnosis, I was living in Chiangmai, a northern city of Thailand, in semi-retirement after a very fulfilling career successively in the French Foreign Service, International Energy Agency (IEA), global energy companies BP and Equinor, and Chinese energy company ENN. Before COVID, I spent 17 years in Beijing where I worked for the aforementioned companies as senior executive.

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Patient StoriesKirk SmithPatient Spotlight, Xavier Chen
First two weeks on NVL-655 clinical trial: Field Research for the Clinical Trials Committee
First two weeks on NVL-655 clinical trial: Field Research for the Clinical Trials Committee

I started on the Phase II NVL-655 trial on March 1st, 2024, at UC Davis’s Sacramento campus, a seventy-five-mile ride from my house.  I had pre-registered with Dr. Jonathan Riess’s trial coordinator in December, sending records from my oncologist electronically, and answering a lot of questions.  They wanted a record of my initial cancer, and details on the mutations that came up with various progressions, along with all the dates.  The current mutational profile was most important to the doctor for qualification to participate.  My local oncologist knew Dr. Riess personally, which helped, I think, and having your oncologist touch base with a prospective trial-coordinating doctor can help open the door. 

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Clinical Trials, Patient Stories, ResearchKirk SmithNuvalent, Clinical Trials
Patient Spotlight: Dr. Sydney Barned, Maryland, USA
Patient Spotlight: Dr. Sydney Barned, Maryland, USA

We interviewed Dr. Sydney Barned - a medical doctor, ALK patient, and very active lung cancer advocate. We learned about her personal journey with ALK+ lung cancer, how lung cancer has also affected other members of her family, and, more importantly, her tireless involvement in lung cancer advocacy, some of which has already resulted in legislation being passed to help lung cancer patients

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Patient StoriesKirk Smithadvocacy, Patient Spotlight, Dr. Sydney Barned
Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania
Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania

When we decided to interview Summer Hall Farmen about her personal journey (that includes being a mom to an adult son with severe cerebral palsy), her journey with ALK-Positive lung cancer, as well as her active involvement in our organization (Board member, ALKtALK Healing Arts program, fundraising, and Summit Committees, to name a few), we didn’t realize we were in for another treat. Summer’s interview didn’t just give us a good glimpse of her own life. It also helped us get to know another prominent ALK member whose life is tightly connected with Summer’s life - her father and active member of the ALK Positive Medical Committee, Ray Hall. As we got to hear and learn more about this father-daughter duo and their partnership to give Summer the longest and best life possible as an ALK patient, we were reminded of the values of family, commitment, perseverance, dedication, and above all – love.

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Patient StoriesKirk SmithPatient Spotlight, Summer Farmen, Ray Hall, Brigatinib
Pediatric ALK Spotlight Interview with mother and caregiver Ashley Sitorius, Hampstead, North Carolina
Pediatric ALK Spotlight Interview with mother and caregiver Ashley Sitorius, Hampstead, North Carolina

We interviewed Ashley Sitorius, mother and caregiver of 11-year-old Deliah, who was diagnosed with ALK-positive brain cancer when she was just 7. ALK can actually appear in many pediatric cancers as a driver mutation. Among many things, we discussed Deliah’s (and the family’s) journey in navigating this devastating diagnosis, how she has been able to advocate for Deliah’s treatments (some of them not officially approved for pediatric cancer), and her future hopes for pediatric ALK cancer.

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caregiver, Patient StoriesKirk SmithPediatric Spotlight, Patient Spotlight, Ashley Sitorius, Caregiver
Patient and Caregiver Spotlight: Dan and Brittany Wilson Philadelphia, Pennsylvania, USA
Patient and Caregiver Spotlight: Dan and Brittany Wilson Philadelphia, Pennsylvania, USA

Both Dan (the ALK patient) and Brittany (the spouse-caregiver) are actively involved in ALK Positive and are also this year’s ALK Summit Chairs coordinating our Summit in their home city of Philadelphia, Pensylvannia. We interviewed them both about their background, their life with ALK, and about how their volunteer activity has enriched their lives.

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Patient StoriesKirk SmithPatient Spotlight, Dan Wilson, Brittany Wilson
Patient Spotlight: Marc Rosenzweig, West Bloomfield, Michigan
Patient Spotlight: Marc Rosenzweig, West Bloomfield, Michigan

Long-term ALK patient and founder of the ALKtALK program that has become a wonderful resource bringing the ALK community closer. Marc lives with his wife Carolyn in West Bloomfield, MI. His cancer life started in 2013 when he was diagnosed with Stage 3b Hodgkin’s Lymphoma. He went through 6 months of chemotherapy until he started coughing up blood 7 months later after his last Hodgkin’s treatment. Thats when he was diagnosed with Stage 4 ALK Positive Lung Cancer in November 2013.

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Patient StoriesKirk SmithPatient Spotlight, Marc Rosenzweig
PATIENT SPOTLIGHT: Andrej Krivda, Wettingen, Switzerland
PATIENT SPOTLIGHT: Andrej Krivda, Wettingen, Switzerland

We interviewed fellow ALKie Andrej Krivda on his very interesting journey with ALK+ lung cancer and all the unexpected twists and turns he’s had to navigate since diagnosis. Andrej is the very first person to enter the Nuvalent NVL-655 clinical trial in Spain and one of the first patients to take part in the trial in all of Europe, and we were very interested in his perspective. He also happens to have a fascinating personal history. Enjoy the read!

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Patient Stories, Clinical TrialsKirk SmithPatient Spotlight, Clinical Trials, Nuvalent
Caregiver and Advocate Spotlight: Patty Saccenti, Rome, Italy
Caregiver and Advocate Spotlight: Patty Saccenti, Rome, Italy

Meet Patty Saccenti – a retired throracic surgeon, mother of three, caregiver to her ALK patient husband, and one of our most active volunteers and advocates both within ALK Positive, Inc. in the US and in her country and region of origin, Italy and Europe. “In September 2017, we were just back in Rome - where we live - having just come back from our summer vacation, and we were watching TV after putting our three children to sleep. Suddenly my husband felt something under his finger near his neck and asked me, "what do I have here?"

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Patient StoriesKirk SmithPatty Saccenti, Patient Spotlight
Patient Spotlight – Debbi Martinez, New Jersey, USA
Patient Spotlight – Debbi Martinez, New Jersey, USA

Member and fellow ALKie Debbi Martinez is the volunteer working behind the scenes with ALK Positive’s Kindful fundraising platform and doing a great job at that. For this year’s Lung Cancer Awareness Month, we wanted to honor a volunteer that is not visible by being at the forefront of operations, but is just as invaluable in helping our fundraising efforts go smoothly and seamlessly.

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Patient StoriesKirk SmithDebbi Martinez, Patient Spotlight
Patient Spotlight Ruby Blow, Atlanta, Georgia, USA
Patient Spotlight Ruby Blow, Atlanta, Georgia, USA

“I am a sister, an aunt, and a professional counselor. Until November 2021, I was taking care of my mother, who had Parkinson’s dementia. My mother was already advanced in her dementia when I was hospitalized at age 44 with a collapsed left lung. It was 3 months before I was diagnosed and began treatment for stage IV ALK-positive NSCLC. . . Each day I practice acceptance of what is and cultivate hope for what can be.”

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Patient StoriesKirk SmithRuby Blow, Patient Spotlight, Patients
Honoring the memory of Gina (Super G) Hollenbeck, former president of ALK Positive, Inc.
Honoring the memory of Gina (Super G) Hollenbeck, former president of ALK Positive, Inc.

Numerous tributes were written in the days and weeks following Gina’s passing in early June. This outpouring of love came as no surprise to those of us who were fortunate enough to know her. If you spent even a little time in the ALK Positive lung cancer world over the last five years, chances are very high that you knew of Gina. For the past three years she has served as the volunteer president of ALK Positive, Inc.,

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ALK Positive News, Patient StoriesKirk SmithGina Hollenbeck, Mud or Stars
Patient Spotlight: Emily Venanzi, Newton, Massachussetts
Patient Spotlight: Emily Venanzi, Newton, Massachussetts

Emily Venanzi is an active member of our Medical Commitee (with particular involvement in the Research Review Panel selecting which research projects to fund) as well as our Research Accelaration Committee. As a patient, she is an interesting case, as she "jumped" straight on a clinical trial as her first line of treatment, which she's still currently on. We interviewed Emily to find out more about her, her background, and what research developments give her the most hope for the future.

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Patient StoriesKirk SmithEmily Benanzi, Medical Committee, Patient Spotlight
Patient Spotlight: Nancee Pronsati, Golden, Colorado
Patient Spotlight: Nancee Pronsati, Golden, Colorado

Nancee has been an ALK patient for the last 6 years, and she is an incredible member of the ALK community who is devoting her time and resources to multiple projects and endeavors within ALK Positive, Inc. This year, she is the Chair of ALK Summit 2022 which we are all looking forward to. We wanted to know more about her life and background and what motivated her to volunteer and make a difference.

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Patient StoriesKirk SmithNancee Pronsati, ALK Summit, Patients
Patient Spotlight: Dr. Charelle Samuels, Pittsburg, Pennsylvania
Patient Spotlight: Dr. Charelle Samuels, Pittsburg, Pennsylvania

Dr. Charelle Samuels is an ALK patient and a professional mental health practitioner with decades of experience. She has successfully led emotional support groups and ALKtALK sessions as part of the ALKtALK program, which many members have found particularly helpful. We asked her to talk to us about her personal journey as a professional and a lung cancer patient, her dedication to supporting people in improving their mental health, and her volunteering with the ALKtALK program.

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Patient Stories, ALK TALKKirk SmithALKtALK, Dr. Charelle Samuels
Honoring the memory of Linnea Olson: long-term ALK survivor, clinical trial pioneer, fierce lung cancer advocate, loving mother of three
Honoring the memory of Linnea Olson: long-term ALK survivor, clinical trial pioneer, fierce lung cancer advocate, loving mother of three

The ALK world and more broadly the lung cancer world lost one of its most precious and vocal voices on November 15, 2021, ironically during Lung Cancer Awareness Month and only days before her 62nd birthday. Linnea Olson set a paradigm in the treatment of lung cancer and left a void that is hard to fill. Linnea served as a valued Board member of ALK Positive Outreach Management Group (what is now ALK Positive, Inc.) and continued to be a member of the ALK Positive, Inc. Clinical Trials Committee.

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Patient StoriesKirk SmithLinnea Olson
Patient Spotlight: How to Fundraise for ALK Positive
Patient Spotlight: How to Fundraise for ALK Positive

Research for the right treatments is behind every ALK-positive patient’s hopeful prognosis. While ALK-positive patients now live longer than ever before, we still need more. Our aim at ALK Positive is to improve the life expectancy and quality of life of every ALK-positive cancer patient worldwide and for this reason we are dedicated to funding rigorously-selected, cutting edge research. Fundraising is an essential factor driving this research and all members are encouraged to actively donate and/or fundraise towards our common goal. Read on to find out how two of our members organized their own fundraisers and what advice they have for those interested in fundraising for ALK Positive.

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Patient StoriesKirk SmithFundraising, Patients, Lung Cancer Awareness